Monday, March 26, 2012

Sophie's Walk & Roll for SMA -- Save the Date! (June 16, 2012)

Hi everyone,

First off, we’d like to say thank you for everybody’s continued support over the last few months.  We’re doing pretty well so far, and while we miss Sophie all the time and know we have a long road ahead of us… we continue to talk about her  and look at her smiley pictures and videos everyday, and appreciate when others aren’t afraid to mention her name up, ask how we’re doing, etc… she’ll always be a big part of our lives forever.

Second, we recently returned back to Chicago after taking some time away, including a stop in Cambodia where we volunteered at an orphanage for children with disabilities and/or HIV.  We highly recommend the experience of volunteering abroad for people of all ages, experiences, etc… here’s some pictures from our time there:  Cambodia pics  (best viewed via “slideshow” option in the upper left corner, pictures move pretty quickly unless you pause the automatic transfer)

Lastly, we are excited to announce the date of Sophie’s memorial celebration and our first annual Walk & Roll event to raise awareness and funding for SMA:  Saturday, June 16th.  We look forward to celebrating Sophie’s life with everyone and helping support a great charity for this terrible disease.  See below for the official “Save The Date” for more details, official event website and registration page will be available soon.

Thanks again for all of the support,
- Liz & Mike


Event Description:  Celebration of Sophie’s life and our first annual walk & roll event to raise awareness and funding for SMA  
Location:  Lincoln Park – Chicago (event will be located just south of the Lincoln Park Zoo)
Date:  Saturday, June 16, 2012   (note that this is the Saturday of Father’s Day weekend)
Time:  Check-in begins at 11:00am CT
Registration:  The official website for the event (including participate registration) will be available soon
Travel Arrangements:  Note that due to the busy tourist and conference season in Chicago in the summer, we highly recommend out-of-town guests book their travel reservations soon.  We have reserved a number hotel rooms for out-of-town guests at discounted rates, let us know if you would like to reserve one of them.


Sophie’s Story:
Our beautiful daughter Sophia Kathleen TerHorst (“Sophie”) was born on March 12, 2011. Despite being a little peanut at birth (4lbs 5oz) and a few other challenges early on, she did great when we brought her home from the hospital and we were filled with the hopes and dreams that all first time parents experience.

Our entire world flipped upside down a few weeks later.  We had noticed that Sophie had below normal movement of her arms, legs, head and neck, and took her to see a pediatric neurologist who hinted that Sophie might have Spinal Muscular Atrophy (“SMA”).  This feedback came as a huge shock to us, and we immediately “googled” the disorder (like any parent or patient would do) on our phones before we left the parking lot.  Sophie fit the devastating description almost perfectly.  Lab work was done and confirmed that she indeed had SMA.

We quickly realized the magnitude of Sophie’s diagnosis and decided that palliative care (through Children’s Memorial Hospital and Horizon Hospice) was the best treatment option for her. We strived to give Sophie the highest quality of life as possible… we lived each day to the fullest, showered Sophie with attention and as many experiences as we could, and focused on keeping her comfortable at every stop along the way with the help of the palliative care team.  She in turn filled our days with smiles and more joy than we could have ever imagined.  Sophie peacefully passed away on her 9 month birthday, and though we miss her more than words can describe, we are better people and she will never be forgotten.

What is SMA:
Spinal Muscular Atrophy is the number one genetic killer of children under the age of two.  SMA is an inherited and fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.  ~1 in 6,000 newborns have SMA, which equates to two newborn children born with it each day in the US on average.   One in every 40 people carries the gene that causes SMA, which means there are more than seven million carriers in the US alone.  Currently there is no treatment or cure, however awareness and DNA testing (which can be done with a simple blood test) are very important to preventing this terrible disease.

Sophie’s Walk & Roll Event:
The purpose of Sophie’s walk & roll event is two-fold. One, we want to honor Sophie who was the most amazing soul that we have met. We look forward to catching up with family, friends and anyone interested in participating to help celebrate Sophie’s life.  Second, we want to raise awareness and money for SMA. An organization called Families of SMA (“FSMA”) is helping to organize the walk and was a great resource for us during Sophie’s life.  We want to give back by donating proceeds from the walk to their organization to help support families impacted by the disease and to help with research in hopes that one day no other family will experience the sad reality of SMA.

Questions or Ideas:
If you have any questions on the event or SMA, just ask.  Also, if you have ideas on how to help share Sophie’s story and/or increase awareness and testing of SMA, we’d love to hear from you.

Thank you for all of your support,
- Liz & Mike TerHorst

1 comment:

  1. Thinking of you all often!!!! Maybe we can meet up at the zoo sometime, or even lunch. I look forward to Sophie's Walk. Please let me know if we can help in anyway. My older girls will be in SC, but Billy and I will be there with Ally for sure. We are also doing the FSMA IL Chapter Walk on June 10th, if you want to go and meet additional SMA families with angels on earth and in heaven. It's a nice event, but I know your hands may be full with Sophie's Walk plans. Again, please let me know if I can help in any way. (((HUGS))) Tina, Ally and Family